“Being on dialysis is life changing and unpleasant physically, mentally and financially. On dialysis it feels like you are waiting to die. Your kidneys are not going to get better – you are in God’s waiting room.”
Jim Smith, 60, from Cleethorpes, finally had his kidney transplant in February this year. He was first aware that he had kidney problems in 2002 and started dialysis in 2007. He found attending four-hour dialysis sessions, three times a week very stressful. Initially the dialysis sessions were only available at a hospital unit 30 miles away and involved a 6 hour round trip.
At times he would not get home until midnight and this was at a time when his health was failing. Now with a new kidney, he realizes how unwell he had been. He has more energy and each day feels stronger, although he still needs to have regular follow up monitoring tests and takes a number of drugs to stop his body rejecting his kidney.
Why not donate a kidney while you are alive?
A new charity “Give a kidney-one’s enough” has recently been launched, and in 2010, its founder, Dr Chris Burns-Cox made an extraordinary generous gift to a complete stranger. He gave them one of his kidneys. The charity highlights an important problem. There are 40,000 people in the UK receiving dialysis because their kidneys are failing and 7000 people are waiting for a kidney. On average two people on the waiting list die each day.
A shortage of available organs for donation is an ongoing problem. Donation is not always considered an option by the relatives of people who are brain dead and only being kept alive by life support machines; and not all organs are suitable for donation. Repeated public surveys suggest that 70 per cent of people are willing to donate their organs but only 20 per cent of people make their wishes and intentions known to their family. It is unusual for relatives to override decisions about willingness to donate, if these wishes are already known.
The UK has an opt-in system for organ donation, meaning organs are not removed for transplant unless a person has registered and given consent to be a donor. So far attempts to change this to an opt-out system – that presumes consent unless specified otherwise – have failed. Spain has an opt-out system and a proactive donor detection programme. Since its introduction in 1979, there are more organs for donation and shorter waiting lists for organ transplantation. In Spain, the average wait for an organ is six months compared to three years in the UK.
Who are the donors?
Most donor kidneys in the UK come from people who have been diagnosed “brain dead” but have been kept alive by life support machines. There are however a growing number of live donors – people who are happy to donate a kidney during their lifetime. Since 2006, when it first became possible for adults to donate organs to a stranger, 88 people have done so. There has been a recent increase in donors coming forward.
In 2010/11 there were 40 live donor transplantations, up from 23 in 2009/10. Those wishing to donate, need to be in good overall health and have both kidneys functioning well. Aside from the inconvenience of facing numerous hospital tests and needing up to five weeks off work, there is a risk of postoperative complications and a very small risk of death (0.01 per cent). Even after all of this, there also remains a five per cent possibility that your kidney could be rejected.
So what makes people so altruistic? Annabel Ferriman offered one of her kidneys to a good family friend she met at a party. He was in poor health due to kidney disease. She was a perfect match. After making the offer she soon developed doubts and wanted to withdraw, but after further thought and discussion with her family, the transplant took place in 2007.
“I knew you could live with one kidney but first I had to be checked. Age was not a barrier. I was 60 at the time and thought it was unlikely I would lose my [remaining] kidney in an accident. With keyhole surgery it is very safe. I was in hospital three days and only off work for four weeks.” Annabel doesn’t know whether she would have donated her kidney to a stranger. “It wouldn’t have occurred to me at that time. If you know someone and see them suffering, it is easier”.
The regulatory system
The removal of organs is regulated by the Human Tissues Act 2004 and regulated by the Human Tissue Authority. Most live kidney donors offer their organs to relatives, but there is an increasing number of people offering to donate to someone unrelated or even unknown to them. These donors are regulated by the Unrelated Live Transplant Regulatory Authority (ULTRA).
ULTRA’s role is to safeguard the process. It came into being in 2006 following a medical scandal when it was discovered that Turkish peasants had been enticed over to London with offers of work, but instead were then offered money in exchange for their kidneys.
When a donor comes forward offering a kidney, ULTRA has to be satisfied that there is no payment or other coercive element involved. The donor needs to be aware of the risks and understand that consent can be withdrawn at any time. An independent assessor interviews both the donor and recipient to ensure these conditions are all met. For the foreseeable future though, most donated kidneys will continue to come from cadavers.
Messages of thanks
In a transplant, both the donors’ and recipients’ personal details remain confidential in the process. It is possible however to pass on messages through a transplant coordinator. For grieving relatives, knowing that their loved ones have helped another person can be a source of comfort.
Jim Smith received his kidney from a cadaver. He was not given any details about the donor and his choice has been that he “would rather not know”. He said that he “would like the family of the donor to know that the kidney had been used, been successful and given that person a new lease of life… I would like to pass my thanks onto the family”.
When asked what he thinks about live donors he said, “I think they are all absolutely fantastic. There are all these spare kidneys knocking about and you only need one.”
Image: Courtesy of GreenFlames09 on Flickr